Well the vary nature of ripping apart your own personality or that of some you love is incredibly negative and damaging to self confidence. Whether it is your own hidden disability or from perspective of the parent, its emotionally exhausting when trying to tease out what the problems are, and what is WRONG with you or your child, and eek out each piece of what makes you/them different in a world when it’s not ok to be different We spend most of our lives hiding the difference to the rest of the world, effectively a life spent lying, trying to convince ourselves about how normal we are. But it ends up in a destructive spiral of real life events, that we are then forced to draw upon in order to get the help we went so long without.. It really isn’t very nice to have to fill in forms, go through bullet point after bullet point of everything that makes you, you, or your child who they are. And all of it the worst parts of them, or you.

You realise, how very difficult things really are, and how you must be a detestable person, and how, you scraped by so far through life, it’s impossible to imagine you’re still going.. each and every untruth, misunderstanding, aggressive encounter, confrontation is just what makes some of us human, our kind of human. And these confrontations wouldn’t happen if people just learned that actually, everyone comes at situations with their own agendas, and it’s just that some of us have stronger wills to do or not do something. It’s intrinsic in our make-up, the building blocks forge barriers of protection early on, however, it is not difficult for them to come crashing down, piles of rubble and dust when something out of the ordinary happens, it can be anything.

It’s not often the working class gets anything from a Tory. The Conservative party have long been the party for the rich few and not the ‘normal’ working class many.

Now what happens when your ‘normal’ working life is taken away by something like illness and/or disability? Well, you might take some time to get your head around the life changes that this brings, suck it up and, eventually you might want to, or need to ask your Council for some help. You are entitled to do that after all, that is what the welfare state is there for, to support your welfare in times of difficulty and hardship during whatever situation has brought them.

Finally, in a whirlwind of tests, procedures, assessments and shit, you muster up the courage to ask for help and you find you are faced with a Conservative Government, Borough or District, and County. It is at that point that your truly hit a wall.

A huge wall of legislation that is there to support the few, a benefits system not fit for the sewers let alone fit for purpose, and the sort of housing that would render some homeless as an alternative option. Inhumane, and out of control cuts and regulations making it really, actually impossible to carry on. No hyperbole, just genuine adversity.

There is no help, or so you are told.

If you pursue the kind of help available when you have hit a low point, you will quickly find that not only has your morale and self-esteem taken kick after kick to the bottom of the pile, the lowest ebb of a dank basement, if you can envisage being kicked down further still, (yes, it is possible to go there) then what is beyond that deep sense of darkness? You will have to go further downwards scraping your knees on muddy stones, whilst your hands become rough from scratching away at each unwinnable barrier, tearing away the manicured fingernails you once prized so highly. Your face dirty with wet, red clay, ready to ‘plead and beg’ for something that you paid your whole adult life for, but are now told you’re not entitled.

You are explained to, that actually, you will have to lower your expectations, not get what you need, and in turn, not be able to continue the life led for the many years previous, because when you ask for social security, housing support or any additional requirements be met, it is youthat needs to change. The system is broken, so it’s only way to continue to satisfy itself, is to perpetuate the devastation, and you will become broken too.

It is you and your family who are told that you have to adjust. Adjust, not because of the Health Condition, the wheelchair, the Autism, mental ill health. You are told that you have to adapt, not because of the lack of access to work and changes of housing requirements, it is you that has to adjust your mind-set and adapt to the cruel Conservative Government, National and Local expectations that are suddenly inflicted upon you. And it is you that has to keep picking yourself up at every knock down.

It’s exhausting, right? And you’re worn down to the quick and, you know what? It’s not even your fault that your circumstances changed, and it’s not your fault you were born where you were, have this condition or illness, and happen to be in a heartless State that is taking away so much from those that, through no error of their own, just cannot adhere to the status quo, cannot do things any differently, cannot work any harder, and yet it is you that still gets nowhere. That is what a Tory Government does to people, and then it goes ahead and puts on a steel toecap boot, one extra kick in the gut, just to make sure you don’t get back up.

I’m told that tomorrow, Worcester News are publishing an Article relating to my original review on the Overview and Scrutiny Panel that i previously posted (Here) – The comments made to the Paper were made a while ago now, in a typically un-timley manner, since I that time i have been fortunate to gain some more information…In light of this, i’m adding my follow-up that i wrote after a good discussion about the intentions behind the WCC Outcomes. I’ll go further in to it, and i really hope to work with the Worc’s Health and Care Trust directly to smooth out some of these issues, however, in the meantime, here are my (as yet unedited) ramblings.

x x x x x x x x

On Friday I was lucky enough to meet with the Children’s Clinical Services Manager, who is the lead of the Umbrella Pathway, I say lucky as it was nice to be able to get a meeting with someone who has influence over the decisions that impact on us every day within Worcestershire. It shouldn’t be down to luck, however, my professional position blurred things slightly and I think, initially, it felt to my colleague as more of an ambush. That was of course not my intention at all, and perhaps due to my own formal manner (an ASD trait of mine), my contact came across as one thing, rather than another. However, ambush or not, the intent was true and as a Parent who is impacted by decisions made and/or signed off by the LD Lead for Children’s Services, it was an opportunity that I grabbed fully.

The one big issue that came out of the meeting is that of funding, of course it’s funding.

The CCG are telling the Trust what they need to do and where to make savings. This is fine, as the CCG hold the pot of money, but how much push-back is given when this decision is not the best one for the Trust or it’s Service Users? If the Trust go along blindly without due consideration for those they serve in a medical and care capacity, then how can we parents know that the children are safe in their hands? When something comes down to funding, corners are eventually cut. In this case, the WCC have put a case forward in their Overview and Scrutiny Panel Report that highlights to me, where these cuts are being put in, without an idea of the future and ongoing cost implications of trying to change the process for the worse here, at this early stage of accessing an assessment.

I’d like to see the figures, it seems sensible that the figures to back up the changes to an existing process are shared to enable transparency.

The figures I’m interested in is that of the existing ‘pot of money’ and how it is divvied up along the ‘pathway’. I was interested to learn and surprised actually, that there is no one pot of money for the umbrella pathway. It is not held specifically for the Autism Process in either the Trust Mental Health Services, or Learning Disability services. It is allocated to each individual team that has involvement and inputs in to the assessment process. This doesn’t make any sense to me, and it is information that needs exploring further.

In terms of finances and value for money, it also seems sensible that we get an overview of the total cost of a child going through the current pathway, who is paid what, when?

I would personally like to see this, so I can assess whether the current pathway is good value for money, and from a parent’s perspective, pull out the unnecessary elements of the pathway and make way for the parts that need more emphasis placing on them.

It is my opinion, and until I have actual costs I can only speculate, that the current process of following the NHS Pathway is far more ineffective and less financially viable than a parent who manages to go down the Private Assessment route. As a ballpark figure, a Private Assessment might cost a parent £2000 – £3000 to obtain a thorough assessment by an Expert Paediatrician, Clinical Psychologist and/or Speech and Language Therapist. These are experts in their field as many have reached a senior level in the NHS and left the public sector to pursue Private Practice and provide a more focussed Neurodevelopmental service. In that Assessment, everything that is considered over months and years by the NHS pathway, is also considered but in a more appropriate setting, nothing is left out, there are no short cuts in the Assessment process Private or Public. And yet, the time taken is better for the family, it is accurate as carried out by Neurodevelopmental specialists and the relevant issues are measured accordingly, allowing the Specialists to join the dots and lot sooner and make a more accurate opinion, unlike the current fragmented NHS process carried out by ‘jack and Jill’s of all trades’ in terms of Children’s health where problems occur in several professional holding subjective opinions and the facts get lost amongst the ‘dot to dot’. And how much does each one of these appointments cost to carry out (time, admin, paperwork, professional, room hire, rates etc)? I wonder if the whole process was totted up, how much would that be? And then add in the extra pressures that can arise from not having an assessment at all or making incorrect allegations of parenting issues etc, then these costs (again room hire, professionals time, cost of running a triple p course, contacting social services, implementing safeguarding staff?) and then consider the cost absorbed by schools and nurseries (staff, meetings, time out of classroom) and EHCP tribunals and all that goes in to these, and then there is picking up the tab on mental health treatment for those suffering additional anxiety, depression, PTSD and medicating these symptoms? Would all of this really be cheaper than listening and believing the parents with regards to the severity of the ASD symptoms; cheaper than the voice of a second opinion by an expert Specialist, and offering the best diagnostic assessment possible in the very first place?

Secondly, I feel it is important to note that I felt more comforted by the information I gained about the report that I thought I would. Something that is apparent is the language in the report and that the emphasis of the report is based on parenting. According to the Service Lead, the push for support is coming from the Schools and not the parents; this surprised me, as it isn’t mentioned.

Through all of the interventions and graduated responses mentioned in the report, they do not focus on the additional support in schools, it does not focus on the Teachers pushing for additional funding to sustain the classroom support that is required when a child has a (potential) Autism condition, and it does focus on Parenting issues, behaviour difficulties, and an array of other diagnostic labels, than actually once joined together could quite easily be a case of ASD PDA.

If the focus is not on a diagnosis, or a label, then why go ahead and look for other labels – as if the Autism one is off-limits?

My concerns remain, as the new focus on alleviating the front door pressure of a struggling system is not going to resolve the fact that the children still need an expert assessment – of which I am not convinced they get through the current pathway. The lack of understanding about accessing support is rife, and the wider public and professionals need to understand the consequences of NOT diagnosing an Autism Condition. The fall-out is emotional to family, and ultimately financial to the Public services, when incorrect diagnoses are made or unmade, and the families end up fighting the system through courts, be it child protection cases, Education Tribunals, follow-up health care for traumatised youngsters and families who have been impacted negatively by their experiences of the route that took them to the courts in the first place.

We know that the Local Authority have limited budgets, yet the schools are asking for help which isn’t being implemented and this concern isn’t being shared amongst parents. The money spent by the Local Authority fighting back at Parents, could be better spent in giving that support required. And how do we know someone needs support? We assess, diagnose and believe parents.

In PMQs on Weds 22nd Feb, Theresa May PM answered a question surrounding Learning Disabilities and she said that the Government “will be introducing Education, Health and Care Plans”, and my question to her is, why “introducing” and not acknowledge that they actually ALREADY exist and are like fairy dust to obtain? And if the Government are taking an active role in pushing the EHCPs, how do they expect to provide them to children who have not had an assessment?

This topic of ‘assessment versus diagnosis versus need’ is too vague for parents, teachers and children who are growing to adults as we speak.

If the schools need support, they should get it, if the parents need support they should get it, early intervention is key – the Trust gets that right at least, however, their perception of what early intervention is, what form it takes, and who can access it, is drastically off the mark.

With reference to the Review document attached, I appreciate that there are more referrals for ASD coming to light than ever before, and I, more than most, can be cynical about the extent of suspected ASD being banded around. I admit that I am protective of the ‘label’ that gets my 5 year old son his support and, as a late diagnosed adult; I hold my hands up to being blunt in regards to ASD and what that truly means especially when it coexists with another medical or learning disability.

The report suggests various reasons for increased referral rates, the first being increased awareness. This is a good thing, without a doubt – it means people can start understanding the variety of Autism Conditions and know what to look out for in their own children. This should not in any way be acted upon negatively, which unfortunately Worcestershire County Council does in their Overview and Scrutiny Committee outcome on ASD.

Another reason for increased referrals, apparently there is “anecdotal evidence that some people may incorrectly believe it acts as an automatic ‘gateway’ to support and services” How can they reference subjective opinion as evidence without quantifying it?

The problem here is when a parent asks for help with their ASD child, they think that there must be some support and help available, but in actual fact, there is not and this is down to the Local Authority. Parents are at their whit’s end fighting everyone to get them to understand and they, as I did, naively think that someone can help, when the truth is, parents are on their own. This ‘gateway’ to support is a mystical one that does not exist, and services that are impossible to access with a child who has a High Functioning Autism Condition

I’m concerned about the content of the report, but the recommendations made actually frighten me. WCC state they will look for alternative reasons, and to use approaches and interventions for ASD, and this is a worry, as it appears that no lessons have been learnt since the experience we had, and instead the Authorities have taken a massive step backwards for all Invisible Disabilities, particularly High-Functioning ones including Autism.

The long term impact on undiagnosed children and adults is obvious to those of us that live with the condition, and although I feel very sad that this outcome will leave more high functioning autistic people at risk of other medical conditions as a result, such as increased anxiety and depression, the impact on their ‘apparent’ ability to cope in education and the fall-out of them not fulfilling their potential in to adulthood which will ultimately have its own cost implications to the NHS and Local Authorities, it is not this that concerns me most.

I’m massively worried about the impact of the decision to start looking to ‘courses’ as a resolution for the symptoms, as this will not work. They do not offer the support needed and they do not fix ASD symptoms, in fact in a case of Pathological Demand Avoidance these types of ‘approaches’ can create a very unhappy and unwell child as a result.

The main recommendation from the report is based totally on weeding out the cases that will not meet their own criteria and looking to place the blame at any door, other than that of the Autism Pathway. What about the cases who have genuine High Functioning, invisible disability that can only be extracted by an Expert Professional? There is no excuse to cherry pick who gets an assessment and who does not. These are children with individual needs. In what other condition, would it ever be acceptable to not diagnose? It is absolutely unacceptable to put one child’s disability over another, simply because it is too expensive to sustain the current processes in place.

Parents face a continuing struggle with the NHS to be listened to and believed as it is, leading to increasing referrals to Social Services. Child Protection interventions begin when a parent is accused, (wrongly) as I was, of Fabrication and Inducing Illness (previous Munchausen’s by Proxy).

We hear a lot of parents talk about long waiting times for Autism Assessments, ASD Diagnoses, and the battle to gain support. My experience is that in order to even access a fair assessment, a diagnosis, the educational and emotional support that should follow for children, parents are treated like perpetrators of some abuse or worse, treated like they don’t have the knowledge or ability to pick out ‘ordinary’ and ‘unusual’ behaviours in their own children. An ask for help for an undiagnosed child leads to judgements on parenting and worse. This is how important accessing an early, correct and expert diagnosis is in terms of the support available. It is not true that the support is offered on needs of the child, because those needs are put down to other aspects of behaviour, it is true however, that the support offered is a way of teasing out parental issues, using archaic attitudes and parenting strategies which in fact makes the whole assessment process unbearable for child and family.

I am sending out a plea to Parents of Autism and Special Educational Needs (SEND)…A plea to the Mums and Dads who think that their vote won’t count, the “why bother’, “no-one listens to us” families, the families who have been let down by the current Government and the failing system we have so far endured on behalf of our children. I appeal to the disenfranchised mothers and fathers of children with Autism and SEND who have so often been devastated by a broken system and left with a feeling that there is no change possible for us. Well, we all have a voice and it is so important to use it this Thursday.

I hope to raise awareness of the relevance and importance of making the parent voice heard in Thursday’s elections.

I’ve been considering the Main Three Party opinions and their relevance to all of our Autism & SEND families. It is apparent from the promises that are made (and they are wishful promises that we need to support and get behind) that some parties care about our families and other do not.

In terms of favourable voting for our ASD SEND families, it has to be Labour for me and normal people like me and my family. We are not rich and we rely on the system for our healthcare, our Education and we expect it to be provided at the best possible standards, we are used to our services being funded and to be able to trust Professionals with our children, and for invisible disabilities to be recognised and continually acknowledged. Only decent NHS, Social Care and Education funding will achieve this fully functional role that many children access easily, yet is made difficult for children of ASD SEND.

In terms of Party Manifestos being nothing but wish lists and empty promises, i think it is important to support the party that even acknowledges the very relevant needs of Autism and SEND families. At least if we vote for the right party, the one that makes the promises, we have someone to hold to account to fulfil their promises further down the line. If we vote for parties that don’t even have an air of understanding of our families needs, how we challenge them on it later when they have nothing to answer for, no one to answer to? I have done the leg work looking in to the manifestos, and here is how it stands…

Lib Dems. They make a brief reference to SEND in one paragraph throughout the whole of the 95 page manifesto. They state that they will “Ensure that identification and support for special educational needs and disabilities takes place as early as possible.”

Now this is a mention at least, however it does nothing to say how they will do this and how it will be funded, relying on the fact that all Healthcare Professionals and Education Settings will comply with their wishes and the Lib Dem desire to support SEND children is not sufficient engagement. Let us not forget, this all relies on whether or not an SEND has been identified in the first place, and what it takes for the children families to get to that very important point.

Conservatives, Well.

They mention the word Autism once, in a flippant and second hand manner, lumped in with Learning disabilities. Now i find this dismissive of high functioning Autism and those with other invisible conditions that do not have learning disabilities, this is dangerous territory in my opinion. Invisible disabilities are already way underfunded and the Tory statement that the two should be combined is unacceptable in my view and an indication of their long-term money saving endeavours…potentially a further reduction in services to those who are not easily diagnosed as Autistic, and with all of the cuts that the conservatives are insisting they will still make post the Election, i simply cannot see how or believe that they intend to fund the massive overhaul of services that needs to take place in healthcare and education for the Autistic and SEND communities. The NHS cuts include unfunded CAMHS, a service that the majority of children with invisible disabilities need access to. Constant cuts to to local Councils leads to inadequate children services, lack of training and massive lack understanding, causes huge problems and extra unnecessary workloads dealing with unfounded cases of Child Protection. None of this looks likely to change within the Tory manifesto promise, nor going forward after Thursday.. “We have a specific task to improve standards of care for those with learning disabilities and autism.” Again, i wonder how they will roll this out considering the lack of money and the lack of Autism awareness that this one sentence screams.

Ok, so for my money, it is Labour all the way.

To get our voices heard we firstly need to be understood..The Labour manifesto tells us straight away that they ‘get’ autism, it is in the language, the tone and the coverage it gets within the manifesto. There are many references to Autism and SEND – but aside from that, it is written with both fact and empathy. They speak of “Neurological differences”, “Neurodiversity”, “inclusivity” and “support” for children and Parents..the manifesto goes beyond simply making a brief reference to Autism & SEND for the sake of ticking a box as with the other Parties. These promises seem attainable. With more money put in to the NHS, a diagnosis will be better timed and therefore have better long term impact for all involved. This obviously avoids the massive cost implications that a no-diagnosis could potentially turn through with unrecognised system being left to fester. Early diagnosis and correct support for ASD and the whole family will not only save money, it will save families. It will save lives…just by getting it right first time.

By funding better resources a Labour party is our only hope of gaining the appropriate understanding, funding and ongoing support for the long journey that SEND is…This journey beings with a GP or Health Visitor Appointment and goes all the way through to additional Teaching Assistants in school, flexibility of thinking and up to date autism training in every sector, moving all the way through to DLA or PIP payments. An early understanding will set up our growing kids to not have a constant battle to explain themselves, or to be understood in the wider world.

In our personal situation, i feel that the NHS and Social Care were incredibly unaware of the reality and importance of gaining the right diagnosis and ‘seeing’ the disability of our son at all. Had the small and insular team been sufficiently funded, or had i had time to approach the CCG to insist on expert in ASD PDA, we could have avoided the allegations of Fabrication and Induced Illness that the ‘team’ decided to tarnish me with. Had they been better trained with up-to-date Autism advances then, perhaps my questioning their competence might not have been so challenging to them and the rampant parent blaming and inherent culture of incorrect personal judgements that ‘Professionals’ think that they can lay at the doors of our homes. We would never have had to prove our innocence of FII and pay a Specialist via Private consultation to gain our ASD PDA diagnosis. One that has now been rolled out across the three quarters of my family. An horrendous fight to save our children, my partner and I were treated like dirt by the ‘System’ and the Professionals. NOW, if we had been able to tap in to expert opinion in the early stages, listened to when we asked, and experts been funded by the CCG prior to Occupational Therapists ill-advised referral to Social Services, perhaps our story would have never occurred. As it happens, the lack of understanding in Autism families and our version of events is a far from a one off, it is a silent epidemic within the NHS and Social Care system, one that is worsening all of the time and I put this down to lack of funding, lack of knowledge and lack of empathy…something that the Labour Party and Jeremy Corbyn do in fact promote and align themselves with improving massively for ASD and SEND.

An evening of poetry and spoken word including performances by those who are on and support people on the Autism Spectrum.

Performance Poet Janine Booth describes herself as “a Marxist, trade unionist, socialist-feminist, author, poet, speaker, tutor, former RMT Executive member, supporter of Workers’ Liberty, aspie, bi, Peterborough United fan.” She is has an established catalogue of work dealing with Autism and much more.

www.janinebooth.com

Tom Bowes is a public speaker, Autism advocate, writer and vlogger. He runs a Facebook page called Autistic Genius, where he creates videos explaining the different traits of Autism.

www.facebook.com/AutisticGenius1988/

Bernadette Louise is a Mother, Artist, Writer, Fighter. She describes herself as having “a fiery tongue” and writes an “honest sometimes brutal account of parenting and partnering the Autism Spectrum condition”. Bernadette has a history of making self-confessional artworks, and has been frequently supported by Arts Council England.

Accused: An Autism Mother
Bernadette Louise creates a spectacle of oversized Healthcare posters emphasising the ‘invisible’ symptoms of Autism Spectrum Disorder, Pathological Demand Avoidance. In an honest response to the Authorities who accused her of Fabricating and Inducing her Son’s ASD, she uses documentary mobile phone images and direct quotes from the assessment process to highlight a desperate need for PDA Awareness. Quickly the professionals focussed on her as Mother, instead of the Child’s symptoms they were faced with. Bernadette intends to highlight the contradictions and accusations that caused the NHS to refer to Children’s Services resulting in a Child Protection order. Through her Art and Spoken Word event Bernadette exposes the true harm caused by the Authorities to families with ‘unseen disabilities’.
http://www.artrix.co.uk/whats-on/exhibitions/bernadette-louise-accused-an-autism-mother

Support me in continuing and developing the work of BreakfastTree. Help grow the Creativity and Exposure of Invisible Disabilities by donating what you can.

I am on an Autism mission. I am crowdfunding for a Creative Public Engagement project. I am compiling the stories and the battles that need to be shared and desperately need to be heard by the public and by the Professionals. To do this i need a few things…fuel, coffee, printing, time and space. I need to maintain a presence, online and in person…and i need buy people tea, cake and the freedom to share their experiences of Autism & Invisible Disabilities, and the challenges it presents.

I need to continue the work i am doing and need to get the Parent Voice heard.

Support me in continuing and developing the work of BreakfastTree. Help grow the Creativity and Exposure of Invisible Disabilities by donating what you can.

This project is already in existence and currently in its infancy. It’s supported with confidence by Artrix, Arts Council England and Worcestershire County Council as an offshoot of my Exhibition Accused: an Autism Mother. The idea has legs and an ability to share similar stories across many sectors and many a diverse group of families, this is a massively important part of what my work is…sharing and exposing truths and allowing the silenced, the shamed, the innocent and hurt an opportunity to have their voices heard by the wider world.

I am no self-promoter and i rarely admit i need support, and i never ask for any kind of help…until now. I am so passionate about this work and the importance of sharing our joint experiences, that i have started a Not for Profit company to make this awareness project go as far as it possibly can…it would be amazing if you could find something/anything to donate to add to the Breakfast Tree pot for Public Awareness and Engagement.

Thank you, fantastic people

Bernadette

If you would rather give anonymously you can do so here at my Just Giving page

Support me in continuing and developing the work of BreakfastTree. Help grow the Creativity and Exposure of Invisible Disabilities by donating what you can.

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Hey there & welcome

I’m Bernadette Louise.
Mother. Artist, Writer, Fighter.

I have a fiery tongue and write an honest sometimes brutal account of parenting, partnering and being on the Autism Spectrum with Pathological Demand Avoidance. Using Creativity as a therapy tool and to tackle injustice. A Hidden Disability is exactly that, good maskers still struggle. Neurodevelopment conditions and Mental Health conditions are not less damaging, because you cannot see them, they are more so. If you look close enough, the signs are there anyway.